Soup Is My Legacy

souppotI hear my daughter Sammi’s steps on the stairs before her voice calls out to me. Still, I don’t run to unlock the door; she has keys, and my hands are covered in a sticky mass of egg and flakes of matzo meal. When I hear the key turn in the lock, I know what I’ll hear next and, still, it thrills me every time.

“Mommy!,” is the beginning and then, barely as that first word ends, the deep inhale begins, followed by, “Oooohhh! Really?!! Matzo ball soup!!! YES!!!”

This is my legacy, every bit of it, from the key in the door to the recognition of home to the smell of what’s cooking and what it means. This is how I want to be remembered.


Sammi has always loved soup. As a toddler, struggling to gain weight after her first cardiac surgery, she deigned to take tiny sips of a soup whose recipe I’d found in an old magazine and adapted. Chickpea soup became our savior, keeping her weight from dropping to the magically low number that would mean feeding tube. We spiked it with extra virgin coconut oil and kept a batch in the fridge at all times. It got so that I could not eat it myself, but never mind that — Sammi ate and did not wither, sipped and did not die.

When Sammi was only two, I brought a batch of that soup — a recipe I could make in my sleep and, half-crazed with insomnia in those years, often nearly did — to the home of parents who had just accepted two little boys as foster children. Sammi sat in her car seat as I hoisted the pot up the stairs and handed it over. There was, of course, another pot at home for her. These days, when I run into that other mother, she often mentions that soup, usually with the two words we use: “I made The Soup. Your soup. You know? The Soup.”

And I know. Of course I know. It’s powerful soup. Continue Reading…

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How Have You Never Had KUGEL?

bakingtogether

My older daughter, Ronni, ran out of the door of the elementary school one day many years ago with her eyes wide and a story bubbling to the surface even as I crouched down to receive her in my arms.

“Mommy!,” she gasped, flinging her lunchbox into the basket under the stroller where her little sister sat, “I ate all the kugel in my lunch today — but no one at my table even knew what kugel was!

I hugged her and laughed. “Kugel isn’t a food most people have tried, sweetie, unless they’re Jewish or have lots of Jewish friends.”

She nodded. “I know, but MOMMY. How can they LIVE without trying KUGEL?!” Continue Reading…

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Sitting on Eggs: A Missed Diagnosis

sammiegg

On this day in 2010, my tiny, unbreakable five-year-old daughter got the world-changing news that she would be allowed to eat eggs.

For more than six weeks before this photo was taken, Sammi had been asked by her team of gastroenterologists to avoid contact with — and certainly ingestion of — any foods containing dairy, wheat, soy, nuts, fish, or eggs. She was already a vegetarian, and this diet was meant as a way to pinpoint the source of her new, puzzling diagnosis: eosinophilic esophagitis.

We waited both anxiously and in frenetic motion for the first phase of this diet to be over. I hadn’t been afraid of experimenting with my cooking, desperate to find foods that mimicked those we’d eaten in our prior life, but I discovered to my growing disappointment that cooking a vegan, gluten-free, nut-free menu for three meals a day would require nearly all my attention and still be met with regular catastrophe. When it was time to add the first forbidden food back in to her diet, she chose eggs. They were crucial to so many of the things she missed most: matzo balls, deviled eggs, and something resembling a cookie.

I’m writing about this again (I covered the excitement of the day in a previous post) because the single most popular page on my blog is the post called Practicalities of the Six Food Elimination Diet. It is a post written with the memories of the desperation I felt during the early days of this diet, working like a mad scientist, seeking ways to bind starches and proteins, to flavor the world my daughter inhabited. I was in it for the long haul, I thought. I’d heard horror stories about how likely it would be that my daughter would never eat a normal diet again, that the foods her body could tolerate now would eventually become foods her body would reject violently. I cooked and experimented and baked and threw away and started over many times a day.

Years later, with the knowledge that her diagnosis with eosinophilic esophagitis was wrong, I keep coming back to the words of a radiologist who saw Sammi in 2013. You can read the story of her “swallow study” here, but the most important part is his impression that eosinophilic esophagitis was becoming a trendy diagnosis.

It has taken me years to process that idea.

Could it be, I wonder, that medical professionals are susceptible to popular diagnostic trends in a way that blinds them to less-common possibilities? Continue Reading…

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Bike Back

bikeIn 1989, when I was fifteen years old, I had a terrible bike accident. Following my friend and her father through a wide intersection in the final moments of our yellow light, I rode my bike directly into a car that began moving forward just as our light turned red. As I saw that the driver was speeding up and that I would almost certainly collide with her, I did what many people do, instinctively, when they’re frightened: I closed my eyes.

The last thing I remember from that crash was seeing that my front bike tire was about to hit the side of the moving car. The events that followed were a series of flashes: seeing my bike twenty feet away from where I lay on the street, the EMT’s face above me; answering the question of who our president was as the ambulance sped toward the hospital; my mother’s face in the emergency room. I had a concussion, stitches on my scalp, and a compression fracture in one of my vertebrae. The friend who had been behind me on the bike ride said she watched me collide with the car and fly high into the air, landing heavily on my back and the back of my head. It was the 80s; no one wore bike helmets.

I often think of this as I ride my current bicycle around town. I recall the crash from my childhood and even remember the aftermath in the hospital. My back still twinges from time to time, and hair never grew in again over the spot where I had stitches. Still, I love to ride my bike. I love the way a hot day turns cooler with the wind I create on two wheels. I love the freedom of choosing alleys instead of roads, of avoiding traffic, of parking anywhere I can safely lock my bike. I love my bright blue bicycle itself, and the quirky helmet that all my friends can identify from afar. I love the inner child who tugs at my shirt when I get on, proud to keep herself balanced on the pedals and thrilled to be moving faster than on foot but still using only the power of her own two legs.

In short, that bike accident — violent, frightening, memorable — has not ruined my love of bicycling. So, how can we know, as parents, which experiences will wreak havoc on a child’s future interactions and which will be unable to change what is fundamental? Continue Reading…

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EpiPens are for Moms, Too

fish in vitamin c

The back of the vitamin c bottle that nearly killed me

By now, most people have heard about the unconscionable hike in the cost of EpiPens, the emergency epinephrine auto-injectors used by people with severe allergies to stop the swelling of their throats that can kill them if they’ve been exposed to the food to which they’re allergic. These life-saving devices were earning Mylan, the manufacturer of the EpiPen, over a billion dollars a year by the end of 2015. As has been widely reported in the press, the company decided to hike the price of the auto-injector once again this year, just as they have every year since they acquired the patent in 2008. As a business, this is a brilliant profit-making move. They have a virtual monopoly on epinephrine auto-injectors in this country, and as such, Mylan now earns 40% of its total profits just from the sale of the EpiPen.

As a mother, I appear to be a good target for Mylan’s marketing efforts, which are well-documented. After all, parents of children with food allergies are constantly worried about the dangers in a world filled with potential allergy triggers. These mothers — wiping down surfaces, bringing “special” cupcakes to class parties, handing specially-printed cards to waiters and walking back into restaurant kitchens to inspect the cooking surfaces just to be sure are easily convinced to buy one or two extra EpiPens. One for home, one for the car, one for school, one for Grandma’s house…

Mothers do this largely because we cannot trust children to advocate for themselves in the same way that we can advocate for them. Children are more often the ones pictured in the ads, like the ones here and here. These hits mothers exactly where they are most vulnerable. Mothers, in many cases, will do almost anything to protect their children.

What mothers are not as likely to do is to protect themselves. Continue Reading…

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